Balancing Scientific Usefulness with Privacy

AuthorThomas H. Murray, Ph.D.

TitleBalancing Scientific Usefulness with Privacy

Author(s): Thomas H. Murray, Ph.D.

Research on linked or identifiable samples can reveal information about individuals that they might prefer to be kept confidential. They may fear that their privacy may be threatened, or that they could suffer discrimination at the hands of insurers, employers, and other organizations. Yet, there are many times when scientists would like to have as much information as possible about the tissue samples on which they are working, and so prefer to have linked or identifiable samples rather than unlinked or anonymous ones.

A scientist proposing a new exploratory study of the molecular biology and genetics of multiple sclerosis requests tissue samples with an abundance of accompanying clinical or demographic information. The scientist believes that MS is the product of a complex interaction of genetic, epigenetic and environmental factors, and wants as much information as possible in order to develop hypotheses about combinations of factors that may work together to cause or exacerbate MS.

How should we strike the balance between the interests of the sources of tissue in their confidentiality, privacy, and protection against possible discrimination?